Have you ever been caught at a railroad crossing for a really long train? It feels like the train is never going to end, until suddenly, there it is. The end! Just three more train cars. Wait. Did the train just stop? WHY DID IT STOP? No. Please no. Please tell me that train isn’t backing up now. And so, train car after train car passes before you again, stops and then pulls forward, eventually allowing you to be on your way. Well, that is sort of what it feels like living with a child with a urea cycle disorder. Except, I’m not watching some train pass by. I’m under the train. And it isn’t going by slowly and safely, it’s full speed, oblivious to the fact that it just ran me over. And there I lay, under the train, trying to keep it together until the train passes, planning to pull myself up and continue on my way. Each train car is a distressing side effect, a worry, a scary possibility, a thing to make my heart stop and fear for Matthew. And, just when I think “the train is gone. It’s safe to stand up now” the darn thing changes directions and runs me over again. Throughout this journey, we’ve been hit by many such trains. Many of which weren’t but so unexpected, but they knocked the wind out of us, nonetheless.
Recently, we were pummeled by another train. A high speed, out of nowhere, hit from behind kind of train. The genetic results came back on the girls and we found out that they are both carriers for OTC. Right now, this doesn’t really mean much for them. Our prayer is that they, like me, are asymptomatic.(So far they are, but there is a possibility of that changing for all 3 of us at any point in our lives. Although, I’m not sure how likely that is) Our prayer is that they never experience an ammonia spike. They seem to naturally manage the condition. While their bodies can process proteins, they have both always been light on protein in their diets. They very rarely eat meat. They like milk and cheese, but don’t over indulge. They shy away from a lot of the beans and other heavy protein foods, too.
Our fear, though is that both of them carry the possibility of this pain in their future. Maybe, by then, science will be able to screen, have better medicine, better ways of protecting a child with this disease. They are at an advantage, now that we know they are carriers, but it doesn’t protect them from some day having a son with OTC. I hate that at some point they are going to have to decide if it is worth the risk to have kids, or will have to decide if they want to continue treatment, or if they want to list their son for transplant. As a parent, you want to protect your kids from bad things. I can’t protect them from this.
I had so hoped that they wouldn’t be carriers. I guess, if I’m honest with myself, somewhere deep inside I knew that they would be, just as I knew I was a carrier.
At least they have us. At least they have each other.